Friday, October 17, 2003
Just remember boring equals good. John is still hanging tough. He has a few mouth sores, but they are not bad and I really hope they don't get bad. Last transplant he was on morphine for a week and he even had a bit of withdrawl from the drug. I would like to avoid the heavy drugs this time. Last time was enough to last a life time. He doesn't even remember much of the last admission...I want him to remember the admission that saved his life.
I am taking (actually forcing him) him on a walk around the ward.
Bye
I am taking (actually forcing him) him on a walk around the ward.
Bye
Thursday, October 16, 2003
I cannot believe I forgot one of the best and most important moments of the day yesterday. Along with the precious stem cells a letter arrived from the donor to John. It was so touching. The donor joined the NMDP 10 years ago when the were giving a routine pint of blood. He wrote he was so pleased he could help John and wants to meet him after the proper amount of time passes (NMDP requires a year before donor and recipient can meet). Jen says she will post the letter to the website.
Well I better get back to John. He was sleeping peacefully when I left. We had a scare this morning when the person in the next room began having a seizure and they floor called a code. I held John's hand until it was over, and explained from my experience that they call codes for seizures, doesn't mean they are dying and showed him how they didn't even use the crash cart that was brought to the scene. The person is okay. Some chemos can cause seizures as a side effect, that is not one of the side effects for John this round thank goodness.
Well I better get back to John. He was sleeping peacefully when I left. We had a scare this morning when the person in the next room began having a seizure and they floor called a code. I held John's hand until it was over, and explained from my experience that they call codes for seizures, doesn't mean they are dying and showed him how they didn't even use the crash cart that was brought to the scene. The person is okay. Some chemos can cause seizures as a side effect, that is not one of the side effects for John this round thank goodness.
Yesterday was quite a day. The donor stem cells were infused at 12:30 yesterday and within an hour John stopped throwing up. He looks better today. I don't want to fool myself since I know we have a couple rough weeks ahead, but we are off to a good start.
Yesterday it was a very special day. It began (and I know some of you will think this is a bit nuts) when I woke up and the tree outside John's room window was lit up a bright orange. It was the way the rising sun was hitting it over the building, but I swear all I could think about was the burning bush from the bible. I took it as a sign that God was definately near by yesterday and feel like it was there to help us have faith that this was the right decision for John. Actually we do know this was the only decision for John, Dr. Wolf told John if he was his son he would be at John's side going through this with him, that is the best stamp of approval one can ask. During the transplant John held a pressed rose petal roseary and a crystal that his Auntie Jennifer brought with her. The crystal split a peice off when the cells were almost finished infusing. Again, I may sound a bit off, but immediately I tought that this could mean that the broken piece of the crystal symbolized the leukemia leaving his body, broken away from him.
This morning John is resting, he needed platelets, but the other blood work looked good. They cut some of the anti-rejection drugs as his kidneys were saying between the chemo and all the anti-nausea drugs they had enough and they are now giving normal readings.
Yesterday it was a very special day. It began (and I know some of you will think this is a bit nuts) when I woke up and the tree outside John's room window was lit up a bright orange. It was the way the rising sun was hitting it over the building, but I swear all I could think about was the burning bush from the bible. I took it as a sign that God was definately near by yesterday and feel like it was there to help us have faith that this was the right decision for John. Actually we do know this was the only decision for John, Dr. Wolf told John if he was his son he would be at John's side going through this with him, that is the best stamp of approval one can ask. During the transplant John held a pressed rose petal roseary and a crystal that his Auntie Jennifer brought with her. The crystal split a peice off when the cells were almost finished infusing. Again, I may sound a bit off, but immediately I tought that this could mean that the broken piece of the crystal symbolized the leukemia leaving his body, broken away from him.
This morning John is resting, he needed platelets, but the other blood work looked good. They cut some of the anti-rejection drugs as his kidneys were saying between the chemo and all the anti-nausea drugs they had enough and they are now giving normal readings.
Wednesday, October 15, 2003
Hi Everyone,
I decided recently that a daily journal about our trip to City of Hope with a few more of the medical details may be interesting to all who are following the bone marrow tansplant of John. I am hoping it will also help those who stumble along John's website who are in the same medical condition as John is in and can look to this site for help and inspiration. John as most of you know was diagnosed with AML M0 September 2001, had an Autogolus BMT February 2002, relapsed in November 2002 and today is have a MUD (matched unrelated donor stem-cell transplant). There are many thoughts and fears that go along with this transplant as it is not a perfect match and there is a larger chance of GVHD (graft vs. host disease), but it is the best that advance medical science can offer him. This is also the last kind of treatment he will receive. So today is a make or break day, the new cells will hopefully cure him and he will live a long and happy life.
John has been pretty sick from the chemo, he was put on TPN (food through and IV) because he can't keep anything down and his stomach muscles are sore from the intractible vomiting. They are giving him adivan and benedryl which makes him sleepy. So pretty much life here is getting John to and from the bathroom, handing him mouth wash and watching him sleep. Today his blood test are stable, where they should be, his WBC is .9 which means his immune system is pretty much gone, his RBC is 15.3 (which is really unusual since it should be dropping along with his WBC and this is the highest it has been since his diagnosis) and Platelet count is 23. He should begin regular platelet transfusion tomorrow.
I will post again if anything interesting happens when the stem cells are infused, usually though it is uneventful, they infuse the cells like a blood transfusion and it takes less than 20 minutes. It will smell funny, like bad tomato and garlic soup. Have a good day.
Becca
I decided recently that a daily journal about our trip to City of Hope with a few more of the medical details may be interesting to all who are following the bone marrow tansplant of John. I am hoping it will also help those who stumble along John's website who are in the same medical condition as John is in and can look to this site for help and inspiration. John as most of you know was diagnosed with AML M0 September 2001, had an Autogolus BMT February 2002, relapsed in November 2002 and today is have a MUD (matched unrelated donor stem-cell transplant). There are many thoughts and fears that go along with this transplant as it is not a perfect match and there is a larger chance of GVHD (graft vs. host disease), but it is the best that advance medical science can offer him. This is also the last kind of treatment he will receive. So today is a make or break day, the new cells will hopefully cure him and he will live a long and happy life.
John has been pretty sick from the chemo, he was put on TPN (food through and IV) because he can't keep anything down and his stomach muscles are sore from the intractible vomiting. They are giving him adivan and benedryl which makes him sleepy. So pretty much life here is getting John to and from the bathroom, handing him mouth wash and watching him sleep. Today his blood test are stable, where they should be, his WBC is .9 which means his immune system is pretty much gone, his RBC is 15.3 (which is really unusual since it should be dropping along with his WBC and this is the highest it has been since his diagnosis) and Platelet count is 23. He should begin regular platelet transfusion tomorrow.
I will post again if anything interesting happens when the stem cells are infused, usually though it is uneventful, they infuse the cells like a blood transfusion and it takes less than 20 minutes. It will smell funny, like bad tomato and garlic soup. Have a good day.
Becca
hi everyone. this is aunti jennifer. i just set up this 'blog' for john and becca to communicate with all of you while they're at the city of hope. We will continue to update john's web site every week or so, but you can check in here in between updates for up-to-the-minute news!
